Cognitive behavioral therapy for autoinflammatory diseases

This talk was presented as part of the “Managing your Autoinflammatory Disease: Lifestyle and Wellness Workshop,” which took place on April 28, 2018, at Boston Children’s Hospital in Waltham, MA.

Watch the video or read the transcript below. Also, take a look at other videos from this workshop.

The transcript has been edited for clarity.

Dr. Carolyn Snell:

Hi, I’m Carolyn Snell. I’m one of the psychologists in the Medical Coping Clinic at Boston Children’s Hospital. We are a group of four psychologists and a number of trainees who work within Psychiatry with patients who have different types of medical conditions. We get a lot of referrals from Rheumatology, certainly, but from also departments across the hospital. We see people with a wide range of conditions, and helping people manage and cope with their medical conditions is one of the major things we do.

In addition to helping people get through medical procedures and deal with specific issues such as needle phobia, we help people manage stress associated with their medical conditions, either because stress is stemming from their medical condition or because stress may be contributing to their condition. Although I’m not an expert on autoinflammatory conditions, I think there are many things that are common to how stress and illness can play into one another, across different medical conditions.

One of the interventions that we use most frequently when we work with children and teens with chronic illnesses is cognitive behavioral therapy (CBT). CBT is something that has permeated our culture in many ways, and it’s probably something that some of you have heard about or read about in the media. The idea is to be able to manage the thoughts, the behaviors, and some of the physical responses to stress in order to reduce anxiety, stress, and depressive symptoms.

CBT has been used to treat a wide variety of conditions. There’s a large evidence base for how cognitive behavioral therapy can help patients with anxiety and sad or irritable moods. There’s also much more specific evidence around coping with chronic pain and dealing with specific medical conditions. It’s been tailored to the unique needs of different medical populations.

What are the components of cognitive behavioral therapy? First, we would start with psychoeducation, so we would talk to people about the stress response and how that’s like a smoke detector in your house. Sometimes that smoke detector goes off because something is burning, like if you burn something in your kitchen, and it should be going off. But sometimes it goes off because there’s some steam from your shower or something like that. Similar to that smoke detector, our stress response gets triggered by things it should get triggered by, but it also gets triggered by a lot of things that we don’t need to necessarily be so stressed about. In order to gain some more control over that, one of the first things that we typically teach kids is relaxation training. Relaxation is really about how you can reduce some of the stress response in your body- that fight or flight response that happens when people get triggered by stress. The response could be either from negative stress, or from positive stress associated with exciting events and life changes.

We teach people techniques like deep breathing, which we do through timed breathing and teaching people how to breathe more into their abdomen and take long, slow deep breaths. Sometimes we use tools such as biofeedback to help with that. Biofeedback is when a person has a sensor that’s attached to their fingertip or maybe to their earlobe, and it can measure things like your pulse, or skin conductance, which is how much sweat there is on the surface on their skin. As you relax, you can actually see on the computer screen those things changing in the body. So it’s a tool, it’s not really so much a standalone intervention, but it’s a really helpful way to be able to show that relaxation is working for somebody.

The cognitive part of cognitive behavior therapy is really about helping people to look at their thoughts. Often, when we’re in stressful situations, our thoughts tend to get into particular patterns. Our thinking might get more rigid, more black-and-white. We tend to catastrophize about things and think about worst-case scenarios, and a whole variety of other cognitive distortions. These are things that are in some ways adaptive. You can see why you would have evolved to be thinking about those worst case scenarios, because then we can hopefully be prepared and avoid them. The problem is that often, those are not things that are realistically going to happen, and they’re just causing us a lot of unnecessary stress and distress. We try to help people gather evidence about those things. This isn’t positive thinking but more just that we want to be able to think realistically and be able to use the evidence from our past experience to say, Is this a realistic thought that you’re having about “I’m going to fail this test” or something like that. It may not be realistic, if you know from your past experience, “Actually, I’m going to do fine”.

Then the last thing that we help people with in CBT is the behavioral part of cognitive behavioral therapy. That looks a little different depending on what it is that we’re working on. For anxiety, a lot of that is about facing situations that one might have been avoiding because one was anxious. If a person had social anxiety, they might be avoiding certain types of situations, not meeting people, not wanting to go to social gatherings, things like that. We try to help people gradually and step-by-step get back into those situations that they might have been avoiding. If instead of anxiety we’re working on something like chronic pain, then it’s more about gradually getting back to doing more activities (within what is recommended for an individual) and figuring out what’s that right pace at which to take things.

Those three parts of CBT together really are a positive, powerful combination: to be able to relax your body, to be able to think realistically about what’s going on, and to be able to not let stress be able to dictate your behaviors, whether they’re behaviors that are related to health or behaviors that are related to life in general.

And so we use those tools to help people with things like the medical stress of doctor’s appointments or hospitalizations. But we also use CBT a lot just to help patients cope with daily life and with the daily stresses of having a medical condition and dealing with having to miss school and adjusting to the new diagnosis.